Fixed Nodes of Transience: Narratives of Homelessness and Emergency Department Use

Abstract

Discourse in popular media, public policy, and academic literature contends that people who are homeless frequently make inappropriate use of hospital emergency department (ED) services. Although researchers have investigated the ED experiences of people who are homeless, no previous studies have examined how this population understands the role of the ED in their health care and in their day-to-day lives. In the present study, 16 individuals participated in semistructured interviews regarding their ED experiences, and narrative analysis was applied to their responses. Within the context of narratives of disempowerment and discrimination, participants viewed the ED in differing ways, but they generally interpreted it as a public, accessible space where they could exert agency. ED narratives were also paradoxical, depicting it as a fixed place for transient care, or a place where they were isolated yet felt a sense of belonging. Implications for policy and practice are discussed.

Keywords

homelessness emergency department use qualitative narrative inquiry storytelling indigenous people Canada

People who are homeless tend to have notably poorer physical and mental health than the general population (Hwang, 2001; Hwang, Wilkins, Tjepkema, O’Campo, & Dunn, 2009; Kushel, Vittinghoff, & Haas, 2001). They also seek care at hospital emergency departments (EDs) at a commensurately higher rate than those with stable housing (Hwang et al., 2013; Ku et al., 2014; Kushel et al., 2001; Mandelberg, Kuhn, & Kohn, 2000). Some researchers have suggested that people who are homeless access the ED more frequently because factors associated with their lifestyle, such as their acute need for food and shelter or their lack of transportation, prevent them from obtaining preventive health care (Gelberg, Gallagher, Andersen, & Koegel, 1997; Ramsay, Hossain, Moore, Milo, & Brown, 2019); others have found that increased physical illness contributes to their greater ED use (Chambers et al., 2013; McCallum, 2019). Some have labeled this population’s pattern of ED use as “inappropriate,” concluding that they choose to access the ED for health needs normally addressed at primary care appointments (Ku et al., 2014; Wang et al., 2015), despite growing evidence that these claims of inappropriateness are inaccurate (Doran, 2016).

In addition to evaluating health care usage patterns, scholars have recently considered how characteristics of the health care encounter itself can affect the ways in which people who are homeless choose to engage with the health care system. For instance, feeling unwelcome in health care interactions can negatively influence one’s willingness to seek health care in the future (Wen, Hudak, & Hwang, 2007). Narratives shared by people who are homeless consistently reflect a sense of being stigmatized in health care encounters. Some have indicated a belief that their homeless status affects the quality of the health care they receive or their wait times for care (Nicholas et al., 2016; Wen et al., 2007; Woith, Kerber, Astroth, & Jenkins, 2017). People who are homeless have reported feeling dehumanized in these interactions (Biederman & Nichols, 2014; Munoz, Aragon, & Fox, 2015), judged or disrespected because of their social position (Martins, 2008; McCabe, Macnee, & Anderson, 2001; Rae & Rees, 2015; Woith et al., 2017), and invisible to health care providers (Martins, 2008). Ramsay and colleagues (2019) reported that perceived prejudice by medical professionals discouraged the participants in their study from accessing health care. The interactions they reported evidenced examples of both “enacted” and “felt” stigma (Scambler, 2009, p. 445). According to Scambler, enacted stigma refers to “overt discrimination” (p. 445), whereas felt stigma refers to the shame associated with social labeling and fear that enacted stigma will occur.

Themes of marginalization and stigma appear in the ED stories of Canadian indigenous populations, who are markedly overrepresented in that country’s homeless population (Belanger, Weasel Head, & Awosoga, 2012). Findings from at least two Canadian studies (Chambers et al., 2013; McCallum, 2019) indicated that indigenous status predicted greater ED utilization among homeless participants. This overrepresentation is one of many social and health inequities that indigenous Canadians face (Lavallee & Poole, 2010) in a culture shaped by a history of colonialism and paternalism (Smith, 2012), as well as the consequences of related policies such as the Indian Residential School system. Browne and colleagues (2011) conducted an ethnographic investigation of indigenous Canadians who had been triaged as “nonurgent” at an urban ED, finding that the participants tended to expect providers’ perception of them to be based on their race. Such findings echoed those of previous qualitative studies in which indigenous participants reported perceiving significant stigma within the health care system (Benoit, Carrol, & Chaudry, 2003; Levin & Herbert, 2003) and feeling freedom from that stigma when accessing services in indigenous-led environments (Van Herk, Smith, & Gold, 2012).

Members of marginalized groups have consistently indicated that their marginalized status influences their lived experience of health care encounters. Despite increased attention to their voice, however, we still know little about how those who are homeless understand their experience of the ED and its role in their day-to-day lives. Especially in view of the widespread depiction of their ED use as inappropriate—for treatment of nonurgent illnesses, enabling addictions, or simply for food and shelter—further research on how this population understands their own ED use is warranted, as this understanding will inform how people who are homeless decide to engage with the health care system.

Method

Theoretical Approach

We approached the participants’ ED stories from the perspective of narrative theory. By analyzing their stories, we can evaluate how people who are homeless understand the role of the ED in their day-to-day lives. Narrative is commonly understood as the practice of storying our lives and the lives of others. These stories constitute the building blocks of cognition (Bruner, 1990), as we structure, in narrative form, our understanding of our experiences, our identities, and our world (Atkins, 2004; Bruner, 1990; Salmon & Riessman, 2008). Narrative constructions are not framed in isolated, individual fashion; rather, “Identities and selves are shaped by the larger socio-cultural matrix of our being-in-the-world” (Smith & Sparkes, 2008, p. 6). To formulate these narratives, we must draw on the storylines available to us within our society (Gergen, 1994; Miller, 2011; Smith & Sparkes, 2008). This is an active process, whereby individuals negotiate their understanding of identities, experiences, and culture, accepting some features presented by society while resisting or disputing others (Taylor & Littleton, 2006). We adopt a storied resource perspective of narrative, according to which “narrative selves and identities are socio-cultural phenomena, realized within active relationships, and . . . are taken up, modified and individualized” (Smith & Sparkes, 2008, p. 20).

As this process implies, not all storylines in any given culture hold equal weight. Some narratives are more hegemonic than others, representing what society deems normative or how life should proceed. Andrews (2004) refers to these as the master narratives of a given culture. “Trouble” (Bruner, 1990; Taylor & Littleton, 2006, p. 25) arises when individuals’ experiences fall outside the master narrative, forcing them to reconcile their experiences with what should have happened. In this situation, people develop counternarratives that are no longer fully aligned with the master narrative, though not necessarily directly opposed to it. Alternative cultural resources may be drawn upon while aspects of the master narrative remain or are reinterpreted, comprising the process of actively “taking up, modifying and individualizing” (Smith & Sparkes, 2008, p. 20).

Analyzing participants’ stories from a narrative perspective sheds light on how participants make sense of this trouble in the context of positions of social disadvantage. Furthermore, the lens of master narrative versus counternarrative (Andrews, 2004) illuminates elements of agency, resistance, power, and structural inequality, as well as the cultural resources upon which participants draw to make sense of these elements. Moreover, narrative theory is well suited for health psychology research, because narratives are interpersonal constructions and their analysis “provides a means of exploring key dimensions of therapeutic [doctor-patient] relationships” (Good & Good, 2000, p. 243). In addition, experiences of illness and medicine are often understood through narrative constructions (Hydén, 1997).

Procedure

Participant recruitment and characteristics

The present study took place in the context of a mixed-methods research project regarding ED use among people who are homeless. Interviewees were recruited from among a sample of participants at the Winnipeg site of the At Home/Chez Soi Housing First demonstration project (Distasio, Sareen, & Isaak, 2014), who had given consent to participate in related studies. At the time of recruitment, a 4-year follow-up study was underway, facilitating access to participants’ current contact information.

Prior to contacting the participants, we reviewed their self-reported ED use over the course of the Housing First study and ranked it by decile. We then selected participants so as to reflect a range of ED use, sampling equally from the upper deciles (eight to 114 ED visits over a 2-year period), middle deciles (four to seven visits), and lower deciles (one to three visits). We did not select anyone for whom no ED visits were recorded. We also intentionally ensured balanced representation by gender to allow for gendered narratives to emerge, if relevant.

Study candidates were contacted through the Winnipeg site’s research office by phone, letter, or social media (Facebook). We also used snowball sampling, asking those who agreed to participate if they knew anyone else from At Home/Chez Soi who might be interested.

The resulting sample consisted of 16 persons (nine females, seven males), ranging in age from 29 to 60 years, with a mean age of 45 years. The reported age of initial experience of homelessness ranged from 7 to 49 years, with half experiencing their first period of homelessness in childhood. We also asked participants to indicate their longest period of homelessness; answers varied from 4 months to 10 years, with the exception of one participant (age 45) who indicated that he had spent most of his life without a home. At the time of the study, 13 participants had secured some form of housing, but most noted that their current living situation was poor or unstable. Two participants had obtained employment (one full time, one part time), but 12 relied on social assistance and two on panhandling for their income.

Regarding self-reported ethnicity, 12 participants identified as “Native,” “Aboriginal,” “First Nations,” or as a member of a First Nation (e.g., Cree, Ojibway); two as Métis; and two as White. The overrepresentation of participants with indigenous ancestry reflects that in the overall population of Canadian homeless (Belanger et al., 2012).

Interview and transcription

Interviews occurred in private office space at either a local mental health facility or a downtown university. These locations were chosen due to the participants’ familiarity with them through the Housing First project, as well as their proximity to locations and communities where the participants resided and/or accessed other services. One participant requested an alternative meeting location, which was accommodated while still ensuring privacy. Participants were provided with compensation consistent with that for interviews of similar length in the earlier study, along with funds to cover transportation costs. Following the consent process and completion of a background demographic questionnaire, they participated in open-ended, semistructured discussions regarding their use of hospital EDs. We made a concentrated effort to elicit stories of past visits and the circumstances surrounding them. Interviews lasted 60 to 90 minutes each and included prompts and questions such as the following: “What is it like when you visit an ED?” “Tell me about a memorable time. What happened?” “Why were you there?” or “Tell me about a positive/negative experience in the ED.” The interviews were audio recorded and professionally transcribed for content, and pseudonyms were used to protect confidentiality. Notation was also added to the transcripts to denote pauses, overlapping speech, and changes in speed, volume pitch, and emphasis. These notations are retained in the transcript excerpts that are shared in the “Findings” section, as they can be relevant to some of the inferences we made. As such, the reader is encouraged to reference the article’s Note 1 when reviewing the enclosed narrative excerpts.

Analysis

We then applied narrative analysis to the interview transcripts, working at three levels: thematic, structural, and performative (Riessman, 2008). The thematic level concerns the content or themes of the participants’ stories, that is, what they are trying to communicate. Thematic analysis looks for the intended message of the story, or perhaps the moral (if there is one). Structural analysis seeks to identify how participants communicate—for instance, how they organize or arrange their stories, or different storytelling techniques used to facilitate conveying their message. Finally, the performative level of analysis considers who the teller is, the audience, and the cultural resources or pressures that shape the narrative.

Analysis followed an idiographic, stepwise approach. Each level of analysis was considered separately within each interview, followed by the evaluation of similarities and differences within each interview across the various analytic levels. Between-interview observations were then made, comparing and contrasting similarities and differences across participant narratives.

Qualitative rigor

To ensure the quality of the research, we applied the criteria proposed by Tracy (2010), which include rich rigor, credibility, and ethics. The strategies adopted for ensuring rigor were consistent with recent American Psychological Association task force guidelines for methodological integrity, with regard to both fidelity and utility (see Levitt, Motulsky, Wertz, Morrow, & Ponterotto, 2017).

As for rich rigor, we have already described above the study context, the sampling, the data collection and analysis processes, and the sufficiency and relevance of the theoretical constructs used. Time in the field was ensured through our prior involvement in 6 years of data collection for the Housing First demonstration project, as well as focused consultation with local health care practitioners who serve people who are homeless. Furthermore, the initial study questions and design were reviewed by a local advisory body composed of indigenous representatives and others who have experienced homelessness and mental illness. Their input helped to frame our interview questions and approach.

Consultation with the advisory board also constituted a crucial component of the study’s ethical process, helping to ensure that we carried out the project in a culturally sensitive manner. Ethical approval of the study was obtained from a university health research ethics board.

Sincerity and credibility were ensured through a reflexive approach to the research, with multiple team members directly reviewing the data. As much as possible, thick quotations from the interviews are provided to enable readers to interrogate the data for themselves and form their own opinions. Also, the data shared are multivocal in nature, depicting differences within and between participants, rather than a one-dimensional oversimplification of the participants’ narratives. Participants were invited to request a summary of study findings in written or verbal form; a small minority opted for a postinterview conversation, but most requested no follow-up information.

Findings

Although the clear majority of stories narrated were about physical and mental health concerns, the focus was rarely on illness. On the contrary, receiving treatment for the illness or injury was only a minor plot point, if mentioned at all. Treatment was taken for granted in their stories, as if presumed to be a part of the story and, thus, not worth mentioning. Instead, participant narratives centered on the ED encounter, particularly the environment or the interactions surrounding it. Although participants incorporated elements of narratives found among the general population regarding how the ED is constructed and positioned, the dominant storylines involved negotiating the complex power dynamics in EDs, along with issues related to the social expectation that people will take responsibility for their own health and health care. The tension between powerlessness and agency introduces a paradoxical way of understanding the ED.

Power in the ED

Participants anticipated, at best, a cold, clinical encounter, in line with the medical–technical setting in which the interaction took place. Such coldness did not constitute “good” health care in their view, however. Good encounters occurred when physicians or hospital staff stepped out of their dominant position and chose to use their authority for the patient’s benefit. These atypical positive experiences were often characterized by unexpected warmth, compassion, or pausing amid busyness. Following is one example (as noted, the reader is encouraged to reference the transcription notations in Note 1):

Every time I’ve needed real help, I’ve gotten it . . . I was in here not too long ago . . . These doctors were taking forever. I was sitting in the emergency room and I was watching my leg turn red, like I’m sitting in the emergency room and I kept looking at my leg and it started going all the way up my leg . . . I kept telling them, “Something’s going on. Something bad is happening. I can see it like I’m watching my leg turn red.” They kept saying wait, they kept saying wait, and I kept saying, “No, I can’t wait. Something’s happening. I know . . . Something bad is happening.” . . . I still ended up waiting . . . The nurses were <ignoring me>. <Everyone was busy>. This one lady doctor walked by and I said, “Excuse me.” I said, “I know you guys are really busy, but something’s really wrong. Can you come here?” She walked to the room and she looked at my leg and she was, “Holy shit,” and she called and like in two minutes, ten doctors were there, like it was just crazy. But yeah, I couldn’t believe like how much I was getting sloughed off.

The participant starts her story by performing a sense of urgency and panic, emphasizing it by repeating the symptoms and frequently raising the pitch of her voice (the italicized words). In particular, she portrays her powerlessness in this situation, told to wait by people “in the emergency room”—the one place where someone in her condition should not be expected to wait. The wait at the ED was disempowering and she felt that she needed to advocate for the care that she considered urgently needed.

Most study participants, like this one, described their wait for medical care in the ED as a problem. They often attributed the long wait times—and, indirectly, their disempowerment—to their homelessness and disenfranchised social status. Most explained how the wait exacerbated their chronic feelings of powerlessness or discrimination. In the following excerpt, a participant was asked how having a home influenced the care he received in the ED:

Participant: I really can’t see any difference, it comes down to the waiting game… Like I said, that one time, they took me right away because of my blood pressure. Couldn’t get it down. (2) Or else you’re not really an emergency. They figured, you know, you’re at the bottom of the list, cause you’re not really—they don’t consider you an emergency. They know you’re there for help, but you can wait.

Interviewer: And at the time, did you agree with that?

Participant: Yes and no, in a way… I can see their point now. I’m thinking clearly now, I can see their point.

Interviewer: What do you mean, “I’m thinking clearly now, but not then”?

Participant: I was just thinking it’s the same old bullshit game. I’m homeless, (2) I’m automatically put on the bottom of the list. (2) That’s what I thought. Homeless people are put on the bottom of the list, unless they’re dying, or almost dying. (2) I think that’s basically true, because you look at the inquiry about [a local ED], in the past, how they treat homeless and that, you know, and that’s come out, you know (1) they’re kind of forgotten. They’re left there for hours.

Two cultural narratives are in play in this excerpt. On one hand, the wait is narrated as a product of the medical environment and the priority of emergent over nonemergent symptoms. However, the lens of homelessness has a powerful effect as the participant then reframes the wait because he is “at the bottom of the list” due to his homeless status.

The main reason why the participants did not expect good care was that they viewed their experiences through the prism of powerlessness as homeless. In fact, they fully expected to be discriminated against. Stories of racism were rare, but perceived discrimination based on homelessness was nearly ubiquitous. Participants also anticipated that their concerns would not be taken seriously.

Being judged is one thing. (3) I seen a lot of people get discriminated on, because they’re, like somebody that’s homeless, and maybe that guy really does have a broken arm or a broken leg, and he really is there for real reasons. But because of his appearance, and >maybe hasn’t< changed his clothes in a month, I seen that happen a lot.

This participant stressed both “homeless” and “does” in the same sentence, as if being homeless immediately triggers suspicions of the legitimacy of the need for care.

At the same time, participants did not rush to conclude that medical personnel are unjust and lacking empathy, because they also view medical staff as caring, compassionate professionals who have the patient’s best interests in mind. Thus, a tension arises between the ideal of hospital staff who care and the encounters in which they do not seem to care:

Interviewer: Yeah, you said kind of (2) the hospital is kind of the same way in that they just don’t seem to care.

Participant: Well they do (1) and then they don’t. I don’t know. It depends on your situation.

Interviewer: It seems like both, kind of depends.

Participant: Yeah. Well it’s their job to care (1) and then they don’t. ((laughs)) I don’t know what they’re thinking but I can tell you the impression of what they’re thinking (1) or what they might be thinking.

Interviewer: Do any of the interactions that you had kind of jump to mind as far as that would just gave you the impression they didn’t care or they didn’t—(1)

Participant: Well, the comment about frequent flyer was one. (1) I thought, because I’ve been to [the ED] before and then, she seemed nice, but then she made that comment. She was the one you go see the triage with. She seemed like she cared … But when she said that, I thought it was funny but you know (1) she thought I was there just for the prescriptions.

This participant was somewhat reluctant to voice his opinion that health care staff do not care; the pauses in his speech and the uncomfortable laughter indicate that he was expressing something that he did not feel completely comfortable saying. Although he felt unfairly judged, as well as misled regarding the triage nurse’s compassion, his initial reticence to share the story suggests that he felt he was contravening an unwritten rule of receiving care, and that his status does not give him the privilege of critiquing a powerful medical professional.

Powerlessness Versus Personal Responsibility

The power differential was only one undercurrent present in how participants made sense of situations that they thought exemplified poor care. When asked why she had been “sloughed off” in her story about waiting while her leg turned red, the participant cited above reported, “It would be probably because of like my history here… I don’t deny not being here and not fucking being an asshole. I’ve done a lot of shit here.” In other words, she referred to her past, morally questionable behaviour as if it justified poor care.

The dominant cultural narrative of personal responsibility for their poor care collided with the participants’ stories of powerlessness in their health care. The conflict between the two creates a pressure to perform agency, if possible, within the inalterable system that is in place. Consistent with the personal responsibility narrative, the participants described agentic actions that tended to fall into five storylines. In the following discussion, we have parsed them for clarity, because most participants tended to rely most heavily on one narrative type, although they often interweaved threads of the other storylines into their narratives in subtle ways.

First, one participant restoried her life to align with the narrative of personal responsibility as shown in this excerpt:

Interviewer: So are there complaints that you hear from—because you mentioned people complain about the ER, / what do they have to say about it?

Participant: Yeah, but/ a lot of that is bullshit. Yeah, a lot of the fucking, the rubbies come in here, a lot of the fucking sniffers come in, they fucking use this place up and then they fucking wonder why they’re sitting there for 10 hours. You know? That’s why. I don’t fucking blame the staff here. I fucking see it downtown all the time. Fuck, I wouldn’t rush to them. Look, they do it to themselves… And >I’m Native< (1) you know? I see Natives and I tell them the same thing. Well, if you’re going to be all fucked up, why am I going to give you my change? ((laughs)) YOU KNOW, like REALLY though ((laughing))… Who wants to help somebody like that, you know? I understand it, and I’m sober and I’ve taken a step back from a whole bunch of shit.

As someone who is now housed and sober, this woman accentuated her distance from “that” type of person who is homeless. She resoundingly condemned a people group to whom she used to belong. But this is not an easy position to occupy. Accordingly, she became loud and laughed as she began to notice her own discomfort with what she is saying. To be permitted to conflate homelessness, substance use, and indigenous ethnicity, she must emphasize her indigenous in-group status. Perhaps, she feels like a “token” (Gent, 2017; Kanter, 1977) in the prevailing group; she emphasizes her visible minority self-identity as a Native person to justify bringing in the social stereotypes she is conflating. The cost of joining the dominant group is that she must derogate her own identity to belong.

A second storyline was to avoid the ED altogether. Four participants broadly narrated their lives in this way, indicating that they would not go to the ED unless they absolutely had to. Their primary reason for this avoidance was perceived problems with ED care: helplessness, anonymity, frequent mistreatment, and chaos. If they did need to seek care, they tried to be good patients to minimize the risk of uncomfortable situations occurring. Other researchers (e.g., Gordon, Sheppard, & Anaf, 2010) have found that members of the general public also feel a need to be a good patient when presenting to the ED with nonurgent symptoms or as a repeat user, so as to avoid being accused of abusing the health care system. For the people in our study, acting like a good patient was connected to their status as homeless, as they tried to ensure that no complaint could be leveled against them. The only agency they could exercise was to control their own behaviour, fully aware that their homelessness made them more vulnerable to the perception that they were abusing the health care system.

Three participants described a third plot line, portraying helplessness across all of life, of which health care encounters were a small part. They depicted the ED as a place to survive, but yielding to its power in a posture of fear. The ED’s permanent fixture as a place open to the public, combined with its role as a center of authority, made it a place to seek safety; yet, at the same time, they were scared of what might happen to them there.

Well, my friend (1) my friend, just recently, my best friend, one of my buddies, she went into the hospital for a (1) pneumonia (1) and they put her on an oxygen… This just happened like a couple of weeks ago… <When she got up she was ((rapid, deep breathing))>. She pushed that >buzzer< right away they came and said, “What’s wrong?” and her oxygen was completely shut off … They looked behind the curtain at this >native guy that was there<… I said… “He could have killed you in your sleep .” (1) Like stuff like that it’s kind of, its scary.

Other participants resisted societal tropes of how the ED “should” be used. They counternarrated against the idea of appropriate ED use, portraying themselves as protagonists beating the system. They used the ED to survive in savvy ways, exerting subversive power in a place of imposed rules, regulations, and discriminatiosn. In this group of participants, the stereotypical “abuses” of the system by people who are homeless appeared, such as obtaining unnecessary prescriptions or feigning illness to avoid subzero temperatures. Such “inappropriate” use, however, was not the participants’ only way of resisting the requirements placed upon them by the health care professionals:

There’s one nurse who I told her I was okay, and she was just, I don’t know, ignoring me. “Nurse? I’m all right.” “You gotta wait to see a doctor.” I was like, “Come on, nurse, I’m okay.” <And, I don’t know>, I just got mad at her… So I put on my clothes, I ripped the needle out, and I walked out the door. Surprising they didn’t see me though, ‘cause I was sneaky.

Leaving the ED due to displeasure with its rules and procedures, either before or after receiving care, was a common tool for resisting the authority of the doctors and nurses.

Three other participants threaded the avoiding, yielding, and resisting narratives together when describing their ED encounters. Sometimes, they concealed their homelessness, dressing carefully or choosing not to disclose their lack of fixed address.

Participant: Well, when you’re homeless, you (1) you’re in the back of the bus, way in the back of the line. And someone else will come that has an address, and it’s like they’re cutting you. We’ll be right with you, sir, we’ll be, we’ll be right with you. And you’re just seeing all these other people going in right away. When you don’t have an address, how are they going to help you?...

Interviewer: And did you find that that changed at all, when you did show up to the ER when you had an address?

Participant: Yeah. Come in, just wrote down my [information], (1) and you’re there, you’re in the waiting room. Yeah, we’ll be right with you. Just a minute, we’ll be right with you. What about now? I wanna see a doctor, help me out here. (2) “Where do you live?” “Mmmmmm.” (3) So that’s when you start coming up with bullshit addresses.

Finally, two participants affirmed that the ED was the best place for them to receive the health care they needed. They resisted the claim that homelessness precluded them from legitimate ED care. Rather, they understood the ED as a place where they belonged, whether due to a particular medical condition or because it was, for them, a place of acceptance.

Participant: I went to [one hospital] one time and I stayed there for five days. I didn’t like the treatment at all.

Interviewer: How come?

Participant: That’s when blood was coming out and um, you were farting all the time and all that old blood. (1) And I stunk and I asked, “Can I have-<Is there any way I can have a shower?”> And they didn’t want to take the >IV< out. And then that morning, they woke me up early and they got me into the washroom and they stripped me and left me there. I’d never go back there. I just want to go to [the other hospital], ‘cause they seem to know. I think they deal more with, like >the drunk people<. (1) You know, you can go there and they don’t look down at you for being all hungover and stunk, you know? (1) That’s how I see it over there.

Note this woman’s emphasis and changes in intonation (as indicated by the underlining and italics, respectively) when describing being stripped and left alone. She felt that she was treated inhumanely. At her hospital of choice, she feels that she belongs even though she is one of those who are “all hungover and stunk.” Those are her people and that is her place.

The Paradox of the ED

This participant’s comparison of two hospitals also underscored a paradox in how she portrayed the ED. Despite her attempts to convey the acceptance and belonging she felt at one ED, she also viewed it as a place of loneliness and isolation. At one point in her interview, she said, “I get lonely sitting in the ER cause I’m by myself all the time. I look around, everybody’s got somebody else, one of their family members.” This was an extension of how she portrayed her homeless lifestyle, in that, she was independent and alone while homeless, and she continued to perceive herself in this way even though she had housing. Many others depicted the homeless lifestyle in a similar way, as adrift and isolated. For her, in particular, the paradox was that the loneliness was painful but familiar. She felt she was accepted because she was a social outcast.

Paradoxical narratives of the ED appeared across all participants. Much like the other fixtures of homelessness, such as shelters or soup kitchens, the ED was always there, a fixed node in lifestyles of transience. In fact, the ED was a fixed place of transience. Although some participants felt under surveillance, based on their prior medical history or their fear of being identified as homeless, they were never truly known. They were depersonalized within the “system.”

Interviewer: One of the things you said earlier was you’d say anything. You’d push, you’d get mad, because you didn’t care. You just want your pills. How would you have reacted if somebody did stop and say “You’re using a lot” or how would they have helped you?

Participant: I don’t know. I think about it now (2). I don’t know if I <would’ve gotten mad>. Maybe I wasn’t ready too, right?… But if somebody would’ve said like, (2) “You’re taking 60 T3s in one day, that’s a lot of fucking pills, right?” Then maybe I would’ve said, “Well, maybe it is a lot of pills,” you know? Like, “wow,” but I didn’t at that time, it was just—it didn’t occur to me.

Interviewer: They just pass you through, kind of thing.

Participant: Yeah, like because it’s [the] emergency room. They have to. They have so many other things going on and I understand that too. That’s why sometimes you slip by too, right? Because they have so many things going on here. Sometimes how I got my pills too was they were >so fucking busy<. It was just like, <Here take your pills and get out> right?

In the social services net that our participants accessed in the broader community, they were identified and outed as needy. In the ED, every patient is in need, regardless of housing status. But being in a space that was public, transient, and anonymous had both benefits and costs. Benefits included the ability to hide one’s disenfranchised identity, the possibility of blending in without being subject to judgment, and protection from harm due to having so many people present. Costs included continued loneliness, the ability to hide without being known or helped, and the risk of public stigma if they were identified as homeless.

In sum, the ED, is seen in multiple ways constrained by its role as a stable, fixed point of transience in a transient life and a public, accessible extension of an impenetrable, overwhelming health care system.

Discussion

We sought to address the question of how people who are or were formerly homeless understand their care experiences in the ED and its role in their day-to-day lives. We found that the ED’s role is multifaceted and variable. A small minority saw it as a resource for survival, and some participants admitted to using it to avoid the cold or obtain medications for their addiction or that they could sell. However, all viewed the ED as a health care facility that they should be entitled to access. Regardless of the role it occupied in their narratives, discrimination and powerlessness were anticipated and incorporated into all the participants’ stories as they explained their reasons for accessing this health care space. Although stories of enacted stigma (Scambler, 2009) were rare, complaints about the ED that are common among the general population were interpreted through presumed or felt stigma, colouring participants’ understandings of the ED setting or the actions of medical staff. Participants’ lack of alternative explanations caused them to conclude that the felt stigma was the driving force behind their long waits, the busyness of caregivers, the isolation, and other ED characteristics.

The ED also played a paradoxical role in participant narratives. It was a transient space that matched their transient lifestyle, yet a fixed, public, accessible space; a place where they were isolated, yet belonged. This paradox allowed participants to believe that they could exert some control over their health care experience. The participants could not change how or when they received meals or beds in homeless shelters. Moreover, in other medical encounters they cannot hide their disenfranchisement as easily, making them more vulnerable to perceived or actual abuses of power. In general, for most participants, the ED was a place where they could exert a little more control than in the rest of their lives.

Overall, the participants understood themselves as infiltrating a discriminatory space, watched by a system that they were somewhat unwelcome in as health care professionals tried to screen them out. Some responded by avoiding the ED, some by advocating for their right to use it, some by acquiescing to those in authority so that they could stay, and some by using the ED for their survival, hoping not to get caught. One participant narrated her story from the perspective of the powerful other, allying herself against her disenfranchised past. Indigenous participants said little about their ethnic identity, but when it was discussed, it was conflated with derogatory images of disempowerment and discrimination.

Contributions to the Literature

The participants’ stories of ED care reflected many perceptions also present in the general population. Gordon and colleagues (2010), in their literature review on the public’s experience of the ED, observed several notable themes. First, despite the medical-technical setting, patients expected care for their emotional needs as well—an expectation that was seldom met. Second, patients desired more communication regarding all aspects of the ED encounter, including triage, wait and diagnostic processes, their condition, and their treatment plan. The experience of waiting in the ED factored greatly into participant stories of ED care, but time spent waiting seemed less important than the amount of information provided as to why they were waiting. Third, the emergency room environment tended to contribute to a sense of disempowerment. For instance, the presence of marginalized populations (e.g., people who are homeless or abuse substances) contributed to a broadly negative perception of visiting the ED.

Consistent with these attitudes in the general population, our study participants described good care as empathetic, respectful socioemotional care, not just medical treatment. They also understood the ED as a disempowering space, with long wait times exacerbating feelings of powerlessness. In contrast with the general population, however, our participants saw their disempowerment in the ED to be a direct result of their homeless status. At this point, cultural narratives of the ED encounter intersected with cultural narratives of homelessness, incorporating threads of rejection and stigma (Williams & Stickley, 2011), personal and moral failure (Persaud, Mcintyre, & Milaney, 2010), and the belief that “Homeless bodies might infect, spoil or taint [public] spaces” (Hodgetts, Radley, Chamberlain, & Hodgetts, 2007, p. 722).

As observed in previous scholarship (e.g., Martins, 2008), the participants in the present study internalized these master narratives, frequently equating homelessness with lowliness and dirtiness. This was the lens through which they interpreted the poor care they received and the context in which they described ways of circumnavigating perceived discrimination (e.g., concealing homelessness or acting like a good patient).

Simultaneously, the participants resisted these narratives of disenfranchisement by creating counternarratives. For example, they voiced their objections to the discrimination they experienced, asserting that medical spaces should be havens of compassion and care where all patients are treated with dignity and respect. Participants felt that they were unfairly treated but powerless to influence the staff and systems of the ED that dictate the terms of the care available. This powerlessness paralleled their experience of life on the streets.

The narrative practices of the participants regarding their ED experiences strongly resemble those observed in other studies of meaning making by people who are homeless. Farrugia (2010) stated, “The power relations that are inherent in the experience of homelessness . . . act to close down spaces [that allow them] to experience selves which they, and others, recognize as valuable” (p. 82). However, people who are homeless “subvert the meanings which create feelings [of suffering] by drawing on a heterogeneous array of practices and symbols as part of their active efforts to construct identities which do not carry the symbolic burden of homelessness” (p. 85). Other investigations of the experience of people who are homeless in healthcare settings (e.g., Pahwa, Smith, Yuan, & Padgett, 2018) and public places (e.g., Casey, Goudie, & Reeve, 2008), or the ED experiences of other disadvantaged populations (Vandyk, Young, MacPhee, & Gillis, 2018, on people with mental illness; Browne et al., 2011, on indigenous peoples) have identified similar acts of resistance. As participants in the present study possessed multiple disadvantaged identities (mentally ill, indigenous, homeless, impoverished), the prominence of master narratives and counternarratives of homelessness suggests that their homeless identity is an especially salient aspect of the self, one that they are compelled to make meaning of in the ED encounter.

Implications for Practice

Because negative health care interactions influence subsequent willingness to engage with the health care system (Wen et al., 2007), and because episodic emergency care is poorly suited for addressing the chronic physical and mental health problems that people who are homeless often experience, health care providers must be aware of how the ED setting, hierarchy, and overall system are perceived by this population group. For those who are homeless, the health care encounter is a microcosm of their homeless life. The internalized master narratives of society—lowliness, powerlessness, hopelessness, and so on—accompany them into hospitals and primary care facilities. These settings are distinct to them only in that they provide health care. In fact, health care settings are likely to present an even greater power differential than other social services, because of the enormous size of health care facilities and the relative social standing of medical professionals. As a result, felt stigma colours how those who are homeless perceive health care encounters.

Therefore, medical professionals should communicate their understanding of these patients’ life circumstances and overtly affirm that they deserve care, regardless of the situations, actions, or behaviours that have brought them to the ED. Second, they should be sensitive in how they exercise their authority over the patient. Our study participants perceive the hospital as an imposing, discriminatory place where health care professionals are the gatekeepers to information and access to care. To reduce this unfavourable perception, medical professionals should openly and transparently share information about wait times, medical decisions, and logistical processes in the ED, translating this information into the patient’s worldview when possible. Health professionals should seek to empower their patients by freely disclosing why and how they act as they do (e.g., how the patient is categorized in triage, how they are prioritizing patients at any given moment, or the availability of physicians).

Our recommendations of sensitivity to how power is exercised and understanding patients’ experiences are consistent with characteristics of “authentic healing relationships” as outlined by Grinberg, Hawthorne, LaNoue, Brenner, and Mautner (2016) in their description of the care provided by the Camden Coalition of Health Care Providers (CCHP) to people who use hospital services frequently in Camden, New Jersey. Such relationships were characterized by security—“accepting, present, reliable, attentive” (p. 250)—and genuineness—“nurturing, honest, respectful, and interested in the individual” (p. 250)—and were linked to positive health-related psychological outcomes. Medical professionals should seek to understand the unique perspective of the patient with whom they are interacting, tailoring their care to the patient’s worldview. To do this, they must spend more time with the patient than the minimum required for assessment, diagnosis, and treatment, developing understanding of and empathy for what the patient is thinking and experiencing at that moment.

Implications for Policy

Professionals’ ability to adopt such a stance is influenced by health care policies. For instance, providing the additional time required to develop authentic healing relationships with patients may require additional staffing in EDs. This could include adding more medical staff, as well as incorporating other professions (e.g., social work, psychology) to ED teams. Grinberg and colleagues (2016) also highlight the importance of continuity as a characteristic of an authentic healing relationship. Although security and genuineness should be displayed by all the ED staff, providing continuity of care may be better suited to professionals who do not need to provide emergency medical care to the next patient. Furthermore, postdischarge follow-up may be important for developing relationships with patients. By way of example, CCHP uses a multidisciplinary team to provide patient-centered aftercare to connect patients to needed social and medical services (Martinez, Koker, Truchil, & Balasubrmanian, 2019).

In addition to staffing changes, ED procedures and regulations affect providers’ ability to adopt a stance of caring for emotional and psychological needs. Participants viewed many logistical aspects of a standard health care encounter at the ED, such as rules governing patient registration and security, as barriers to receiving high-quality, nondiscriminatory care. They also perceived the health care system as intimidating and impenetrable. Although many in the general population may also be unaware of how and why the ED operates as it does (Stuart, Parker, & Rogers, 2003), the disenfranchised participants in the present study found ED processes especially threatening to their own personal power.

The participants were also clearly aware of narratives regarding “appropriate” use of the ED and resisted the idea that their use was inappropriate. Individual education and public-awareness campaigns are unlikely to alter their health-seeking behaviours. In fact, any system-driven goals aimed at reducing ED visits by people who are homeless, even if altruistically motivated, are likely to be interpreted as imposed by a faceless system with ulterior motives. We offer two suggestions to address this. First, incorporating the security and genuineness of authentic healing relationships (Grinberg et al., 2016) would make the ED encounter personal and warm, which was something the participants highly valued in the context of the biomedical ED setting. If continuity were also added through repeated connections with a friendly, familiar face, the perceived power differential between patient and medical system could be lessened. Second, health care providers should seek to engage representatives of the homeless community in designing care that is empowering and appropriate for their needs. The participants did view the ED as one part of the health care system where they could exert a small amount of agency. Participatory-action approaches could recruit representatives with lived experience of homelessness to provide input into systems and models of health care that would empower them in making health care decisions that would be compatible with their lifestyle and their understanding of their own needs.

Limitations

Although the participants’ diversity in age, gender, and housing history allowed for the identification of commonalities across a broad range of life backgrounds, exploring the viewpoints of various subgroups of people who are homeless, such as those who also have HIV/AIDS and/or brain injuries, would be useful.

The present study is also limited to the stories of people who are or were homeless and excludes the perspective of health care providers and policy makers. Future studies could probe how health care providers narrate their interactions with people who are homeless, or how policy makers understand the role of health care systems in delivering care to those who are homeless. Elucidating the perceptions of all stakeholders will help us transform health care so that it can best meet the needs of those who access it.

Finally, our study took place within the context of a universal health care system. This policy feature undoubtedly influenced how participants narrated their health care encounters. For example, they assumed that some form of treatment would occur, and instead focused on their encounters with health care professionals. They also expressed the expectation that they were entitled to access the health care space. In other settings, people who are homeless may need to contend with narratives of care affordability in their ED stories.

Conclusion

To facilitate the empowerment and agency of people who are homeless, researchers and policy makers must more fully grasp how this population understands and interprets their health care experiences. Our participants found the health care system imposing and paradoxical, and they expressed multiple motives for using the ED and multiple ways of engaging the health care system. The path to improving patients’ health and health care access is, in this case, as complex as the patient population involved. The findings from this study support proactively engaging users in the development of more responsive, empowering health care.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The present study was facilitated through a Doctoral Fellowship from the Social Sciences and Humanities Research Council, and a JG Fletcher Award, JG Fletcher PhD Fellowship, and Dr. Richard Douglas Oatway Memorial Fellowship from the University of Manitoba for the completion of this and other related research projects.

ORCID iD

Ross McCallum

Notes

Author Biographies

Ross McCallum was completing his doctoral studies in psychology at the University of Manitoba at the time the research was conducted. He is now a staff psychologist at the Manitoba Adolescent Treatment Centre.

Maria I. Medved is a professor of Psychology the American University of Paris and adjunct professor of Psychology at the University of Manitoba.

Diane Hiebert-Murphys is a professor at the University of Manitoba, faculty of Social Work and the Psychological Service Centre.

Jino Distasio is a professor at the University of Winnipeg, Department of Geography and Institute of Urban Studies.

Jitender Sareen is a professor of Psychiatry, Psychology and Community Health Sciences at the University of Manitoba.

Dan Chateau is a research scientist at the Manitoba Centre for Health Policy and an assistant professor at the University of Manitoba, Department of Community Health Sciences.

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